Dear Pitt Hopkins Family,

It’s New Year’s, the time of year when many of us reflect in the hopes of making this year better than the last. And for special needs parents, it’s filled with questions. Will this be the year? The year that my child takes his first steps? Speaks his first words? Will this be the year that scientists finally come up with a treatment that can really help make my child’s life better?

We all work so hard at the first few questions. We drive to and from countless therapies. Spend sleepless nights on the internet researching. Why? Because those first steps, they feel inevitable. Every day they feel like they’re coming. So we don’t just wait and hope, we work for them. We hold our children’s hands and we promise not to let them go, not to let them down.

The last question, however, the one about treatments, sometimes that’s harder to work at. It can seem so intangible.  So challenging. And it is. I can’t promise you that there will be treatments in 5 years or 10 or even 20. But I can promise you this: we are closer today than we were two years ago.

We now have researchers all over the country dedicated to eliminating the challenges of Pitt Hopkins through science.  And I will tell you – they all work so hard because they believe it’s possible too.  Just as sure as I am about my son, Calvin’s first steps.  It may take a while.  And there may be fits and starts.  But treatments are a real possibility — treatments that could not just help our children walk, but to run, to soar.  Of course there are no guarantees, except for this one– if we don’t continue to push on, to raise money to fund scientific research, I can promise it will never happen.

So how about this year we make another New Year’s resolution? And believe me, this is a lot easier than the crazy therapy schedules we all juggle. Let’s just reach out to the people around us – the people, whether you know it or not, who are so desperate to support you every day. See, if there is one thing I learned from the phenomenon of the ALS Ice Bucket Challenge, it’s that people want a chance to connect, to help.

Forget the gimmick, at its heart the Ice Bucket Challenge was simply friends asking friends for their help. I know I’m making it sound easier than it is. Asking people for money, even for a compelling and promising cause like ours, is hard. But what I find time after time is that the results are surprising and rewarding—not just the fact that people give, but that they give so happily and that they are so pleased to be making a difference. Trust me, you will never feel so loved.  Or so hopeful.  The two things special needs parents need – and deserve—more than anything.

I know what you’re probably thinking—well that’s nice; but how do I ask? What do I say? Do I do it in person? In a letter? An email? The truth is there’s no one-size-fits-all answer. My advice is to tell your story about why this cause matters so much to you. There’s no right or wrong way to do it. Keep it simple, be honest, and do it from the heart.

So this year, if you’re not already involved with events or our annual email campaign, try it. Try something. Anything. Start with just a few people and see what kind of response you get. I think you’ll be pleasantly surprised. I am here to help. Please do not hesitate to call or email me any time. (323-547-3628, Ericlapidus@hotmail.com)

Eric Lapidus 

The first ever Pitt Hopkins Research Symposium was held September 19, 2014 at the Whitehead Institute for Biomedical Research at MIT.

The event was attended by 60 researchers and parents alike, each side gaining a new perspective on this syndrome that plays such a critical role in many of our lives. In just two years, researchers from all over of the United States and the world have made incredible strides in the field, and have fostered much hope for new discoveries to come. Seventeen researchers presented talks detailing remarkable projects, ranging from studying patient-derived stem cell models of TCF4 haploinsufficiency to behavioral tests on TCF4 (+/-) mouse models.

Symposium Agenda

Ella’s 3rd Annual Bounce Extravaganza was held on Sunday, September 28th in Rochester, NY. The day was filled with lots of fun things for the kids of all ages to do: zoo animals, crafts, music, dancing, karate, fencing, inflatables, and TONS of sports.

There were two Pitt Hopkins “super E’s” present at Ella’s Event. Our family was so excited to be joined by Eleanor and her family from Syracuse. Raising awareness of PTHS was one of our family’s top priorities. With approximately 500 people present at the event we feel we accomplished that goal.

Our community surrounded us with love and support in so many ways at the event. With their help we are blessed to say that we raised $11,050 for the Pitt Hopkins Research Foundation.

It is a day that we will never forget.

Dearest Eastside Eagles,
It already seems like a dream that we were in Greenville celebrating Spirit Week with all of you, in large part because you all seem to good to be true. You are an exceptional group of human beings devoted to doing exceptional things. You understand, fully and completely, that a person is not known for how others treat them, but for how they treat others.

We are so blessed and humbled to have been chosen as the recipient of Spirt Week and we will never be able to thank you enough. Indeed, the words thank you seem insufficient to express the depths of our gratitude, but we will say them anyway— THANK YOU, EASTSIDE. FROM THE BOTTOM OF OUR HEARTS, THANK YOU.

We are still reeling from the amount of money you all raised. I’m smiling ear to ear as I type this and think of that extraordinary sum. This contribution will significantly alter the impact our research can have—at a time when we really needed it. As a baby foundation, we were about to hit our third year slump. A common occurrence; after donors have given two years in a row, they are less likely to give for a third year. But the money you raised has put us at a whole new level, a level that will allow us to continue funding the incredible researchers that have already made such strides in the last two years.

But it was so much more than the money. You not only touched our hearts, you healed them. Nowhere else in the world are our kids treated like rock stars. Nowhere else in the world would a lovely girl ask our kids to the school dance or pay money for a chance to have frozen yogurt with them. Nowhere else in the world would students sing songs to our kids on command or line up to have their photos taken with them. That experience, seeing my son, and all the Pitt Hopkins children being treated with such love, such kindness, gives all of us parents so much hope for a brighter, better future.

I think I speak for all the PTHS families when I say that you all have brought us a sense of peace — a peace we could not have found without you. Of course, as special needs parents, there will be days that are tough, but when they come, we need only remember your faces, your smiles, your hearts, to pull us out of the slump. We need only remember that there is true goodness in this world–the goodness you all showed us.

We hope that you all will do the same. When you are hit with heartache or pain, we want you to remember that you — ALL OF YOU– have the power to create joy, to heal hearts, to change the future. That is a power we all have, but many don’t realize it. You, as students of Eastside should know, as it is the essence of who you are, the very fiber of your community. It is, at it’s core, the very notion of “Strength through Human Understanding.”

Our only regret is that we did not get to spend more time with each and every one of you. But ALL OF YOU you make up the spirit that is Eastside. Parents, teachers, students, you are all in our hearts. I imagine if there had been a Spirit Week at my high school, I would have faded into the background…I was shy and not very confident at that age. So, to you kids who feel like you fade into the background, I want you to know, we saw you, and more importantly, we felt you. Even if you weren’t able to attend the events for financial or other reasons, you were seen, you were heard, you were felt. Because Spirit Week is about is coming together to raise our voices on behalf of those who have no voice.

My wish for you all is that you retain this incredible ability to help those less fortunate, whether it’s a kid with Pitt Hopkins, the child with no money for lunch, or the student being bullied for whatever unworthy reason. If you do, you will continue to change the world for the better.

YOU ARE EAGLES—and you are angels. You carry this power within. Don’t ever forget it.

THANK YOU EASTSIDE. Thank you for all you have done for us. It is a debt we will never be able to repay. But If there is ever anything we can ever do to try, please don’t hesitate to let us know.
On behalf of the board of the Pitt Hopkins Research Foundation and all the families worldwide with Pitt Hopkins children, THANK YOU.

All our love and gratitude,
Audrey Davidow
President, Pitt Hopkins Research Foundation